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Terri - posted on 02/23/2009
hello karena , well brittany is 6 years old she was diagnosed when she was 1 years old was a huge shock !!! i allready had 2 healthy boys so to me i was like umm how lol anyways i went on to have one more baby and belive me i was vry scared of the what if ?? the chances of it happening agin are vry rare but it has happened but thankfully that wasnt the case for me i had a another beautiful daughter who was healthy . brittany walks with a walking frame she needs asstance with showers and toilet and dressing which makes life a little hard at home. brittany is affected in all four limbs but more so the left side of her she has botox injections every six months they work wonders for her .we live in wa so we attend the cpa do you live in australia ? anyways i had better go chat soon take care . ;)
Karena - posted on 02/21/2009
I just wrote my little story about my 1 year old son being recently diagnosed..would love to hear more of your story?
Can I ask how old your daughter is? We would love to have more children but I am frightened that our 2nd child would have CP as well - not scared of the disability itself - but our diagnosis is so new that I wouldn't want anything to take away from our son getting the most of us? does that make sense?
Deborah - posted on 02/21/2009
I have an adult daughter who is shunt dependent,< hydrocephalus, also known as water on the brain> Shannon also has autistic tendencies, cp, adhd, is brain injured and has so far had 6 "brain" surgeries, Till recently Shannon was in a wheelchair and we were told she would never walk, I am proud to say on Sept. 14th of 2008 my daughter Shannon walked me down the aisle. I had been taking her to a program at the Y Chair Yoga for "silver sneakers" and they let us join in and let me tell you it was one of the greatest things I did, I also took her down to the cybex machines, Please understand there was a lot she could not do but there was still that 2% she could do and on the cybex machines I "helped" her, and everyday it made her stronger.
I am not sure where you are located, there is also a camp that was great for us called Variety Club. Kids come from all over. They are located in Pa with the main office in Phila.
Terri, there is also a comedian Josh Blue, I am not sure if you have heard of him, I am including a link for him and then if you choose you can search a round on it. I would suggest doing a Google on him and actually watching him. He will help you see CP a bit differently < He helped me to see it through my daughter's eyes>.
I would also like to leave you with a poem I end all my post with this poem that was given to me after I had my second child who also is special needs.
God Bless and please feel free to e-mail me anytime
I am an older and have had quite a few experiences lol
Welcome to Holland
"Welcome to Holland"
By Emily Perl Kingsley, 1987. All rights reserved.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.